Odds & Ends & an Update

Last month passed quickly, and without any posts from me! I thought that once Lucas was in school all day I’d be sitting on the couch twiddling my thumbs, but somehow that has not been the case. The days have flown by with almost no couch-sitting. I am settling into my new routine. I have a new work schedule which I’m getting used to. I definitely have more kid-free time than I have had for the past six years, but between physical therapy appointments for my back, other health maintenance activities and appointments, work, and running the household, I’ve not been bored. I’ve enjoyed finishing a few projects that have been half-done since Lucas was born, like his baby book! I’m sorry to say he will never know certain pieces of information (like when his last two molars came in) due to my negligence in recording the information at the time, but I’m pretty sure he’ll continue to live and thrive not knowing.  Thankfully!

One lesson I’m learning in these first weeks of having more time is that my productivity addiction is alive and well. I have been unable to be super productive since Lucas was born–in part because of the demands of caring for a young child, and in part because of the progression of my disease and the resulting loss of energy. I am one of those people who tends to put productivity on a pedestal, perhaps because deep down, my self-worth is too wrapped up in what I can or can’t do.  Clearly it’s something I need to continue to work on. There have been days recently when rather than relaxing, resting or enjoying some quiet, I’m wondering what else I can get crossed off my list. It feels good to get to the end of the day and be able to point to ten things that I accomplished. But just because I can get more things done daily, doesn’t mean I should wear myself out doing so. Being more restful affords me energy and an uncluttered mind to be fully present for the limited time I get to spend with Lucas once he gets home. Note to self: that is more important than any number of completed tasks. What can I say, I’m a work in progress!

I have been spending some time exercising and getting steps each day, but I did break my 10,000 or more steps a day Fitbit streak in early September. The streak lasted for 410 days, so it was a little sad to let it go, but it was the right choice. I broke it on Labor Day weekend. We were with my family for a reunion and I simply didn’t have the energy for both our planned activites and my 10,000 steps. When I mentioned to my dad that I would be breaking my streak, he reminded me that these goals that we set for ourselves only have value as long as they are serving us. The Fitbit streak did serve for me for a while! It helped me to become more active and build stamina. It kept me moving (and therefore healthier) during some emotinally challenging months. However, had I forced myself to get 10,000 steps that day, I would have been harming myself just to uphold the streak. That, my dad said, is serving the goal, and in doing that, it loses its value. Wise words, don’t you think? I don’t need to be a slave my goals. With that in mind, it was much easier to let it go.

Last week I headed back to the CF clinic for my three-month check up. After a rough summer, I was pretty nervous to see where my lung function had landed. It was 35%. That was definitely disappointing as I hoped to at least get back to 38% after all the treatments and therapies I went through this summer, but I wasn’t exactly surprised. In spite of that 35%, I have been feeling more stable this month and am hoping that there is still some healing taking place that will allow me to regain what has been lost. The good news is that my oxygen saturation was 99%, my heart rate and blood pressure were normal (in spite of doctor’s-office-induced anxiety!) and all other aspects of the exam were good too.  In other words, my body is doing a great job of coping with the low lung function. I’m exceedingly grateful for that!

Lucas and Jaime are doing well. I’ll write a separate post about Kindergarten soon, but for now I’ll tell you that Lucas is doing great handling the long day and he loves his classmates and his new school. We are so proud of him! He has enough energy left over to play soccer, this season for a team comprised of kindergarteners and young fives from his school and coached by the best coach in the world (Jaime). 🙂 I just love watching those two together on the field and it’s fun to see how much confidence and skill Lucas has gained since the spring. My boy is growing up!

Fighting for the ball!

At practice the other day, Lucas came to the sideline where I was watching and told me he was going to go back out on the field and score a goal, just for me. And he did! He was so excited and I felt honored. He’s been growing and changing so much lately and is relying on me less and less. His sweet words and actions sure help as I’m adjusting to these changes.

Gooooooooooal!

All in all we are doing well! Life has its challenges but we are experiencing many wonderful blessings too. And there are always fresh reasons to hope.

Yet this I call to mind and therefore I have hope: because of the Lord’s great love, we are not consumed. For his compassions never fail. They are new every morning; great is your faithfulness. ~Lamentations 3:21-23

 

Living in Shadow

This summer has been such a mixed bag. There have been many great things about it. I love the more relaxed pace of the afternoons and long evenings. Last night after dinner the three of us headed down to the park so Jaime and Lucas could play soccer and I sat on a park bench watching them run and laugh and enjoy their health and freedom. It was heavenly.

Run like the wind, boys!

I’ve loved the lazy mornings and the long bike rides and eating breakfast at 11am. I’ve loved the swimming and biking and playdates. Sometimes I think I never want summer to end.

This, however, is the most I’ve ever struggled with my CF in the summertime if I’m remembering right. It’s as if my lungs have forgotten that this is supposed to be my healthiest, most carefree time of the year. Instead I spent most of the month of June on a some combination of IV antibiotics, oral antibiotics and steroids. I had the month of July “off” but struggled through a particularly challenging adjustment period. Once I was through the adjustment phase I was dismayed to find that my lung function had dropped back down five points and after consulting my doctor, we began a round of oral antibiotics at the start of this month. They didn’t seem to be cutting it so last week I started a burst of steroids as well. I can’t find my footing and my lung function is stubbornly refusing to climb back up, even while on the medications. It’s been incredibly disheartening.

My emotions have taken a pretty hard hit, and that has perhaps been the hardest part of this summer. Just three short months ago I was flying high. I was so relieved and excited to have gotten through the winter relatively unscathed for the first time in several years. My heart was brimming with hope and thankfulness. I thought I had finally regained the strength and stability I’d been laboring towards for the past two years and I fully expected to continue to gain health and strength through the summer months. Suddenly I could imagine things for myself that I barely dared to hope for during some of the hardest moments of the past two years. I thought that after jumping hurdle after hurdle I’d finally reached my goal. Yet here I am, no better off than I was two years ago. Back to the beginning again. I imagined blue skies and puffy white clouds, and instead the skies have been dark and the storm clouds menacing.

And it hurts. Dreams are threatening to slip away forever. The hope, the joy, the anticipation I felt last spring seems like some sort of cruel joke now. I feel betrayed. Was I a fool for expecting those clear skies?

I know that in these hard times, the only thing that keeps me from sliding into an abyss of despair and bitterness is my hope and trust in God. But the truth is, it can be very hard to trust God in times like this. As humans it’s our natural tendency to assign blame when things go wrong. It makes us feel like we have some control over our destiny. So in these circumstances, when there’s nowhere to point the finger, sometimes I find myself wanting to blame God. Is God responsible for my current state of health? No, I don’t believe that. But part of me wants to be angry that after filling my heart with hope and joy this spring, He didn’t stop the events of this summer from happening. Why.  Why?

I recently re-read the book Disappointment with God by Philip Yancey. If you haven’t read it, you really should. It’s an open, honest book that explores the questions many of us are hesitant to voice aloud–questions of God’s fairness and accessibility and why He doesn’t consistently swoop in to prevent our hurts–why evil and disease and death seem to have free rein in this world. In one chapter, Yancey discusses Job, specifically The Wager at the beginning of the book, where Satan asserts that we humans are not really free. He argues that we only love God because of what He does for us; that we only love him because of His blessings. As the story goes, Satan is proved wrong by the life of Job, who amidst a staggering amount of suffering, still clings, even if by a thread, to his hope and trust in God.

Satan denied that human beings are truly free.  We have freedom to descend, of course–Adam and all his descendants proved that. But freedom to ascend, to believe God for no other reason than, well…for no reason at all? Can a person believe even when God appears to him as an enemy?…When tragedy strikes, we will live in shadow, unaware of what is transpiring in the unseen world. The drama that Job lived through will then replicate itself in our individual lives…Will we trust God? Job teaches us that at the moment when faith is hardest and least likely, then faith is most needed. His struggle presents a glimpse of what the Bible elsewhere spells out in detail: the remarkable truth that our choices matter, not just to us and our own destiny but, amazingly, to God himself and the universe he rules.” Philip Yancey, Disappointment with God, p. 192-193

I don’t know why God is allowing these struggles in my life right now. Part of my healing is simply acknowledging that and admitting how frustrated and angry and hurt I feel. The next step is making the choice to have faith and to trust God. These feelings of faith and trust can be impossible to muster up on my own. That’s where I turn to the example of the man in Mark 9 who sought healing for his son. He acknowledged his doubt and asked Jesus to help him to believe. Similarly, the disciples asked Jesus to increase their faith in Luke 17. I imagine that Jesus was pleased with those requests. God is not surprised nor do I think He is disappointed with my angry feelings.  He’s my father, after all, and He understands hurt and pain. I think it makes Him angry too. I may be living in shadow now, unaware of what is transpiring in the unseen world, and unaware of how this will all work out. But I am never in shadow alone and my response matters. And so even though my heart is broken and wants stay locked up tight, I ask God to give me faith–faith to believe that He is trustworthy and that He will provide whatever it is I need. Faith that He will complete the work He has started in me and that His plan for me is good. I ask Him to open up my heart so that He can fill it with peace, and then hope and joy again.

Photo by Joyce Gan Photography

“For I know the plans I have for you,” declares the Lord, “plans to prosper and not to harm you. Plans to give you a hope and a future.” Jeremiah 29:11

Keeping Hope Alive

As Jaime recently mentioned, our summer has been great overall! He’s a summer enthusiast, I’m a summer enthusiast, and Lucas has followed in our footsteps to adopt summer as his favorite season as well. We’ve enjoyed days at the pool, time in our garden, park trips, games, lots of soccer, visits with family, art projects and bike rides. If you ask Lucas, though, he’ll tell you that his favorite part of summer is sleeping in as long as he wants. I didn’t realize those attitudes started at the young age of five but I’d have to agree, sleeping in is the best!

A pool date and ice cream with cousins! Well, ice cream for the cousins and a banana for Lucas.

Playing soccer in the sprinkler.

Perler bead art project meets Lucas’s love of deer signs!

Scrambled States game with more cousins!

Jaime also reported that I had been back to the doctor after finishing my round of IVs and was relieved to see that my lung function had come back up to 38%. When I first began the IVs I wasn’t sure what to expect. When I was on them two years ago I went from feeling a little sick to feeling horrible within the first week. This time, however, I felt much stronger and more stable throughout. Relief flooded in when I felt my breathing ease and I knew I was headed back up towards that 38%. Then I started to hope for more. I thought maybe I could surge up into the 40s again which would give me a little more cushion in case my lung function settled. During antibiotic treatments, my lungs are healthier than usual due to reduced congestion levels and less inflammation. It’s not uncommon for my lung function to drop a few points after I’m off the medications, once my chronic levels of bacteria return with their accompanying symptoms.

I made slow and steady progress in the first two weeks of my IVs, but into the third I felt myself plateau. It’s okay, I assured myself, at least you’re back to baseline.  I remember telling my sister that I almost wished I hadn’t hoped for the 40s because it looked like it wasn’t going to happen. It’s tiring being a hopeful person sometimes. Allowing yourself to hope means opening to the door to disappointment. Hopes that aren’t realized lead either to despair or require me to readjust my expectations.

I decided to readjusting my expectations was the way to go. Having done so, I was relieved, even excited to blow the 38%. The rest of the appointment went well too–my blood oxygen saturation, blood pressure, temperature and pulse were all normal. My lungs sounded clear and my heart sounded healthy.  The only thing that gave me pause was my doctor’s confession that he would feel more comfortable once I strung together six months of stability and we saw that the 38% was sticking.

I wanted to feel joy about the 38% and satisfaction for how hard I worked to see that number again, and I did, at least for a time. But after a few days, I began to feel the weight of his comment. I know where he’s coming from. What happened to me–a sudden and not-easily-explained eight point drop in lung function is not a good thing. He has treated hundreds of CF patients over the course of his career.  He certainly knows that lung function can slip down after a course of treatment. He knows from experience that as baseline lung function drops, patients are more likely to have frequent infections and health becomes more difficult to maintain. He’s a compassionate and caring man but he never sugar coats the truth.

And so a few days after the appointment I felt myself sliding into a place of grief. I felt sad that somehow I have gotten to this place of 38%.  I grieved the fact that I was even temporarily pleased with it. Wasn’t it just yesterday I was struggling because I had dipped into the high 40s? And not so long before that I was stuck in the upper 50s, straining with every fiber of my being to get back into the 60s? The honest truth is, I am sick and tired of readjusting my expectations.

With these unhappy thoughts coursing through my mind, I entered the adjustment phase–the span of time that my CF symptoms spike up as my body gets used to life without the help of antibiotics.  This means hours of coughing each morning and again in the evening, back pain, headaches, and poor nights of sleep. It’s about as enjoyable as it sounds. I began to feel certain that I would work and strive and do everything in my power to maintain that 38% and that it wouldn’t be enough, and my lung function would slip down to a new, lower normal. Sometimes it’s hard to hold onto hope when you’re so frequently disappointed, and feeling awful doesn’t help either.

Alexander Solzhenitsyn, who spent years in a Soviet work camp (and therefore knew a lot about despair) said, “All that the downtrodden can do is go on hoping. After every disappointment they must find fresh reason for hope.” Why is hope so important? We know from medical studies that hope itself has a healing power. Hope causes the placebo effect–where patients show improvements just because they believe they are taking a medication that will help them. Hope is such a strong influence that many drug studies are done double-blind so that the patients aren’t influenced by the unconsciously communicated hope of the researcher. There are studies that show that patients who have an attitude of hope experience much better outcomes than patients who feel defeated or depressed, and true hopelessness can even result in death.

Hope is an essential part of a healthy soul. When I’m hopeful I believe that there are good things ahead and that my life is worth fighting for.  It keeps me from giving up. I do get tired of readjusting my expectations. I weather plenty of disappointments in my life with cystic fibrosis. It’s hard that with a progressive disease, what I’m hoping for feels like “less” over time. Just two years ago I was hoping for 50% lung function. Now I’m hoping for 40%. Or even 38%. The numbers are less, but what is behind them is really the same. I want the health and strength to live a full and meaningful life.

The “small” hopes–hopes to recover from illness, hopes for a higher lung function, hopes for a better day tomorrow–they are important. If I didn’t wish for those things, if I didn’t think they were possible, I wouldn’t fight nearly so hard for them.  Sometimes they lead to disappointment. But better to hope and be disappointed than to live in darkness and despair.

I have other hopes too, ones that don’t require any adjusted expectations. I have the hope that God will transform and redeem my pain and bring wonderful good out of it–for me and for others. I believe that the ugliness and pain of this disease is only temporary but that the good God brings from it will be eternal. I don’t know all the ways God has redeemed my suffering but I have witnessed some things. I have seen my faith become stronger and deeper. I have been drawn and into a closer relationship with God and with others because of my dependency. I have struggled but I have also experienced victories. I have been knocked down but I have also overcome. The joys would not be so sweet without the hurts nor the victories so gratifying without the struggles. I know the eternal glories that await me when this life is through will far outweigh any loss I have sustained. I know God is using this disease for my good. I have built my life on that hope.

And my desire for a full and meaningful life? That can happen at 100% lung function, it can happen at 50%, and it can happen at 30%. It may look different at each step of the way and it may involve adjustments and disappointments. I may need to find fresh reasons for hope on a regular basis. But until the day that God calls me home to heaven, I know He will help me to truly live.

We wait in hope for the Lord;
    he is our help and our shield.
In him our hearts rejoice,
    for we trust in his holy name.
May your unfailing love be with us, Lord,
    even as we put our hope in you. 

Psalm 33:20-22

Waging War

It’s time for a health update and this is not the one I thought I would be giving! I had a really great winter, getting only two viruses that I was able to recover from without excessive difficulty. I was so excited as the calendar flipped from March to April, and as we sailed through May I thought for sure I was in the clear. I was dreaming of reaching new heights and regaining some lung function this summer after not battling with a myriad of bugs all winter.

A few weeks ago, however, I started to notice increased shortness of breath. I was keeping up with all my normal activities, but suddenly exercise, yard work, chasing Lucas around, and other things of that nature became more difficult. My seasonal allergies are bad at this time of year so I assumed those allergies were irritating my asthma and I wasn’t too concerned. I headed to a routine pulmonary appointment the last week of May and was surprised when my breathing test revealed that my lung function had dropped from 38% to 34%.

I had no other signs of illness or infection, so my doctor put me on five days of steroids hoping that would reduce the apparent inflammation and get me back on track. I experienced a little reprieve while on the steroids but still wasn’t feeling right, so I contacted him again last week. He put me back on the steroids and added oral antibiotics to address any infection that might be locked up and hiding in my lungs. On Friday I went in for a check and was dismayed to see that my lung function, rather than rebounding, had dropped an additional four points to 30%.

Cystic fibrosis can be puzzling. Most of the time when my lung function drops, it’s because I’m sick and I know it. Usually it starts with a virus and moves to a CF-related secondary infection. My lungs fill with mucus, my airways swell, I struggle to breathe, and I can’t wait to get relief. But this time, I feel pretty decent. I do have the shortness of breath that I mentioned earlier and my lungs have been achy, but overall I have been feeling fine and handling all my regular activities. There was nothing obvious to account for this big drop and that makes it even more unnerving.

My doctor explained that although I wasn’t exhibiting any classic signs of infection, infection is still the number one cause of a drop in lung function. The fact that I wasn’t responding to steroids probably means that although my asthma is always a component of my struggles, it wasn’t the main player in this situation. My doctor ordered a chest x-ray to rule out anything else unexpected, but that came back clear. So we have circled back to the notion of an infection.  This one is hidden, yet waging war on my lungs all the same.

To quote Farmer Boggis, “Dang and blast!” Dang and blast and a lot of other emotions too. A kind of numbness settled in at first. I just couldn’t understand it. Next, frustration. Moments like this shatter any fleeting feeling of security I may dare to believe I have. Getting through the winter unscathed was such a victory–a victory I was reveling in and so grateful for. Yet here I am with my lung function lower than it has ever been before. After a bit the frustration moved aside and the grief set in–waves of sadness swelling up and washing over me as the fears gripped my heart. My lungs are functioning at only 30%. It’s so scary.

Times like this always bring emotional struggle. It’s never just a physical battle. It’s necessary to experience the disappointment, the frustration, and the sadness and face the fears. The emotions never fit into a neat little box. There is no scheduling myself 36 hours to get over it. Friday night was rough but Saturday I felt better. Sunday I woke up in the wee hours of the morning feeling heart-broken. But in the midst of the sadness and frustration I knew it was time to get to work. The tables need to be turned. It is time to wage war against this infection.

This battle has two fronts: the physical and the emotional. Waging war means doing everything in my power. Jaime and I started doing manual percussion on my chest in addition to my normal airway clearance. Monday afternoon I headed to the hospital to get a PICC line placed and I started an IV antibiotic on Tuesday morning. My buddy the treadmill and I have been spending time together each day as currently, brisk walking has been the only thing that makes me cough mucus out.

Attempting to show this infection who’s boss!

To balance off the treadmill work, I’ve been resting more in the afternoons. These afternoon rests are made possible by the arrival of my sister Julie from Tennessee! She got here Wednesday and will be staying through Monday to help me with chores, play with Lucas, give me moral support, and make a bad situation a heck of a lot better. She’s helping me with the physical aspect of this war but also helping all of us get through it emotionally.

Aunt Julie is an awesome playmate and Lucas is thanking her with hundreds of hugs and kisses.

Fighting on the emotional front means a few things for me. First of all, I am committed to continue on with as much of my life and daily routines as possible. The PICC line is so great that way. There are some restrictions, but nothing too limiting. I’ve been spending time in my garden. Nature feeds my soul. I’ve been picking Lucas up from school and running an errand with him here and there.

Lucas, holding the door for his class at pick up!

A quick stop for some groceries and an orange balloon.

We’ve been keeping up with his school work.

A special secret school project to thank his teacher.

I’ve continued my normal work schedule.

Tutoring with my PICC.

I may have to cut back on some of these activities depending on how the next weeks play out, but as long as I have the strength, I want to continue on.

Most importantly, I’m trying to keep my eyes off my circumstances and on my Creator. He is the one who calms my fears and speaks peace and comfort to my heart. While I was on the treadmill the other day, a song came on that I haven’t heard for quite some time. The words were fitting. They go like this:

I will lift my eyes to the Maker
of the mountains I can’t climb
I will lift my eyes to the Calmer
of the oceans raging wild
I will lift my eyes to the Healer
of the hurt I hold inside
I will lift my eyes, lift my eyes to You

From “I Will Lift My Eyes” by Bebo Norman

These troubling circumstances are a lot to handle. These mountains are too high for me and these oceans too rough. The hurt and fear are at times more than I can bear. But none of it is too much for God, and I know my life is safe in His hands. He holds me and watches over my life. And best of all, He has already won the war.

A Windy Weekend

Last weekend we got out of town and spent four days in the windy city of Chicago! It felt great to vacate for a bit. I’ve been on steroids for just over three weeks now. Steroids suppress the body’s immune response, and given the tough time I’ve had this year with staying healthy, I have been making a concerted effort to avoid situations where I might be exposed to germs. Translated, I’ve barely left the house. A weekend away was just what we needed!

We left midday on Friday and took the train. Lucas was very excited and spent the first hour looking out the window and all the farms and forests we passed by. Did I say Lucas? I meant Gnocchi the cat (a character on Curious George and Lucas’s current favorite alter ego).  “Gnocchi” was meowing pretty loudly while we were waiting for the train, but thankfully for the sake of the passengers around us, he quieted down once we boarded.

“Gnocchi”

Our conversation for the first hour went something like this:

L: Look Mommy! A forest!  Do bears live in those woods?

B: Probably not, bears usually live further north.

L: But I want them to live in there!

B: I guess it’s possible.

L: Ok, because I think they do. Mommy, look at the farm!  Do chickens peck people?

B: No, chickens peck on the ground for food.

L: But I want them to peck people!

B: I guess it’s possible….

L: Ok, because I think they do.

[conversation repeats nonstop with various scenarios for 30 minutes]

B: Lucas, do you want to play on the iPad?

L: No, I want to talk about farms and forests!

B: ………….

We arrived in time to get dinner and relax in the hotel for the evening. Saturday morning I was feeling pretty tired from the previous day’s travel (and conversations) so I stayed back while the boys went to the park. While they were gone I did nothing. Really. I laid on the bed and stared out the window. It was pretty great 🙂  Sometimes I feel sad when I’m too sick or tired to be a part of activities, but that morning I was feeling really thankful. Sure, if I had my way, I’d love to be healthy and energetic enough never to have to stay back. But there’s always the flip side of the coin.  Jaime and Lucas have a really special and close relationship, in part because of all the times that Jaime has taken care of Lucas without me, and the countless nights they’ve snuggled up together so I could sleep uninterrupted in a dark, quiet room, and all the adventures they go on to give me some rest time at home. It makes me happy to see their bond. What made Lucas happy that morning was walking by the river, running around like a little maniac, and getting a pigeon to eat out of his hand!

Walking by the river.

Joy! Energy! Enthusiasm!

Lucas feeding his pigeon friends.

Other highlights of the weekend included reading stacks of books and building with Legos at the library, visiting a zoo and farm with my sister and her family, a brief stop at the Magnificent Mile, and a full day spent at Chicago Children’s Museum. Lucas also successfully ate food from three different restaurants. That is what we like to call progress!

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I am so grateful that despite not feeling 100% back to baseline, I was able to go on this trip and withstand the rigors of the weekend. According to my Fitbit, I walked 18 miles and took nearly 42,000 steps during those four days.  I thank God for giving me the needed strength (and coffee)!

Yesterday I headed back to my CF clinic to check in with my doctor. My FEV1 was still at 37%, the same as when I went in three weeks ago. I would have been thrilled to see a higher number, but regardless, I am feeling so much better than I was three weeks ago. I’m sleeping better, coughing less, and having fewer headaches. The doctor said that the virus I was dealing with was strong and nasty, and of course in my situation, complicated by my CF and asthma. It will take more time to recover fully, but because of the progress I’ve made, I’m doing a final steroid taper and will be off in five days. Although I’m grateful for steroids, I’m very ready to be off. The flip side of that coin is pesky side effects like sleep interruptions, anxious feelings, and mood swings to name a few. (Jaime and Lucas are probably ready for me to be off too!) I hope and pray that the spring (if it ever gets here), will bring with it an increase in health, stamina, and lung function.

In the meantime I’m counting my blessings–like energy for a fun weekend away, my chattery four-year old, and a helpful husband to name a few.

Happy Endings

Taking in the beauty of the Christmas tree.

A moment ago, I reviewed the post I wrote near Christmas last year. At the time, I was just getting through a serious illness.  It was the first domino to fall in what turned out to be a series of unfortunate events for my health, resulting in the loss of lung function that I’m one year later, I’m still trying to regain. It was not the best ending to the year.

This year, I’m just coming out of my first infection of the season again, but what a difference. Last year the infection was serious and debilitating, and this year, things began clearing up nicely after just a few days of antibiotics. I’m still having issues sleeping (courtesy of the medications I was on), but I’m done with the course now, and things are starting to return to normal.

Today I headed to the clinic for a breathing test. I didn’t have an exam scheduled, but I asked my doctor if I could have a spirometry just to make sure my lung function was headed in the right direction. Sometimes after an illness, I think I’m doing better than I actually am. Any improvement feels better than the worst days of the infection, and I’ve been known to think I’m doing great when in fact my lung function is still quite low. The opposite has happened too. I also wanted to see if the new asthma medications were helping. The great news is that my FEV1 was 44% today.  That is the highest score I’ve gotten in 2015!  It is up six points from my last exam in November. My lung function is still lower than I’d like (I’m hoping to get back to my pre-2015 health calamity baseline near 50%).  But I’m feeling happy and encouraged, and optimistic about what the future holds. The challenges of this past year have served as a reminder both that I am finite and God is faithful. Part of me would like to go back and delete a few difficult events from the year. But then I remember that God promises to work all things together for good, even, or perhaps especially the hard things.  That reminder fills my heart with peace. This year has a happy ending, and I love happy endings.

Last year after my pre-holiday illness I had to start from square one on my exercise. I knew I wasn’t as weak as last year, but I was still nervous when I mounted the beast [treadmill] a few days ago. I surprised myself and was able to run a mile and a half in 18.5 minutes. Not bad! I haven’t been as active as usual these past weeks but with Lucas around, I certainly haven’t been stagnant. He comes up with imaginitive games to play every day, and they always, ALWAYS involve running and chasing and laughing hysterically. These activites are good for my lungs. Some of his most recent games he named the Stomach Bug, Sharp Pig, the Tickler, and the Kissy Monster. If Jaime is home, he is the aforementioned villian. If not, it’s me.  The good news is after a good long time of screaming, chasing, locking Daddy out of the house (only for him to resurface from another entrance), and jumping out of hiding spots, every game ends the same. The villian cries with loud, dramatic, tears and says he just wants to be friends. He says he’s sorry he scared us. We all become best of friends. Lucas likes a happy ending too.

At Christmastime I think about Jesus and how He came as a baby, to walk among us, to love, and to serve.  Even now He is among us, giving life, hope, peace, and joy. And then He died in order to provide us all with the opportunity for a happy ending. That is the best news of all!

Hail, the heaven born Prince of Peace!
Hail, the Son of Righteousness!
Light and life to all He brings,
Risen with healing in His wings.

Mild He lays His glory by,
Born that we no more may die,
Born to raise the lost on earth,
Born to give them second birth.
Hark! The herald angels sing,
Glory to the newborn King!

Merry Christmas and Happy New Year, Friends!

Click here to view our 2015 holiday card 🙂

Unchanged

About a week ago, Jaime published a post entitled Never Give In. He was excited for me because I’d just accomplished my goal of running two miles in 25 minutes.  He called me resilient.  He called me tenacious. High praise, indeed.

A week out I’m feeling anything but resilient and tenacious.  I guess you could say I’ve been knocked down. I had a routine pulmonary appointment several days ago and I was hoping to see my FEV1 rise up.  It had fallen to 32 during a severe, extended illness this past winter, but was coming back up and had landed at 42 at my appointment two months ago.  I have learned to moderate my expectations because my FEV1 scores don’t move easily, not in the right direction, anyway. The running goals I set were part of my endeavor to regain lung function as I continued to heal from the illnesses of this past winter. I wasn’t expecting a giant gain but was hoping for a few positive points to show me I’d been successful.

I ended up getting 42 again. My score was unchanged. There was zero improvement. At first I talked myself into feeling okay about it. I know the number is less important than how I’m feeling, and I’ve been healthy and strong this summer. But sure enough, as the hours passed, discouragement settled in.  I worked hard. Really hard. I wanted a better score.

My doctor was surprised that I hadn’t made any gains as well, especially since everything else during the exam looked great. He decided to order an echocardiogram to see how my heart is doing. Because of how well I am functioning, he didn’t expect to see anything concerning. A positive result would confirm our suspicion that I’m healthier than my FEV1 would indicate. I thought for certain things would look good.

But we were both wrong. Although my heart muscle is performing well, the pulmonary artery which supplies blood to the lungs was under greater pressure than either of us expected. This indicates that my heart is working extra hard to push blood through the arteries in my lungs, most likely because those arteries have narrowed or are blocked in some way. This negative report was incredibly disappointing. Knocked down.

I gave my treadmill a long, hard stare before I got on it the other day. There was a large part of me that wished to wallow in self-pity, take a few weeks off, cry some crocodile tears over the fact that my efforts didn’t pay off in the way I wanted them to. But that would be giving in. My heart definitely wasn’t in it, but I mounted the beast and banged out those two miles. I did it again two days later. I have to do what I can. I have to try.

I feel insecure right now. A FEV1 score at the lower end of the moderate obstructive range…a pulmonary artery under too much pressure. These are not comforting thoughts. These test results aren’t written in stone…it is still possible for my lung function to rise and the pressure in the pulmonary artery to subside. But there is nothing additional that I can do to facilitate these changes.

With that in mind, I must return to the true source of my hope. It is not in myself or my efforts. It is not in my doctor’s expertise. It is not in my therapies, my treatments, or in my ability to avoid germs. It is the hope I have that my life is held in the loving hands of my Savior, and that He has a purpose and a plan for me.

Several verses surfaced in my mind after I got that disappointing call from my doctor.  One was 2 Chronicles 16:9 which says:

The eyes of the Lord run to and fro across the whole earth to show himself strong on behalf of those whose heart is loyal to Him.

Another was from 2 Timothy 1 (verse 7):

For God has not given us a spirit of fear, but of power, and of love and of a sound mind.

Another was Isaiah 54:10-11:

For the mountains shall depart, and the hills be removed; but my kindness shall not depart from you, neither shall the covenant of my peace be removed, says the Lord who has mercy on you. Oh you afflicted one, tossed with tempest, and not comforted, behold, I will lay your stones with fair colors, and lay your foundations with sapphires.

Sapphires always remind me of my sister Sheri.  She was born and died in the month of September. The sapphire was her birth stone–both the start of her life on earth and the start of her new life in heaven. Her existence was marked by struggle but she never shrank back from the challenges that came her way. The result was a life and legacy full of meaning and beauty. A sapphire is a fitting stone for her. Along with their stunning beauty, sapphires are incredibly strong. The only stone harder than a sapphire is a diamond which the hardest mineral on earth.

It’s helpful to have Sheri’s example when I hit these bumps in the road. She was sapphire-strong because she accepted the strength God gave her and I, too, can take hold of that strength. I can claim it as my own even when I feel angry and defeated–even on the days when I’d like nothing better than to throw in the towel and let someone else be resilient and tenacious. I can hold fast to my faith and to the promises in God’s word–promises of peace, comfort, kindness, and love. He has shown himself strong on my behalf over and over. I don’t know what the future holds and whether God will restore health to my heart and my lungs. They may remain unchanged. But the promises of God are unwavering and ever-present.

They, too, are unchanged.

A Crowded Corner

I have happy things to report today! First an update on Operation Lace Up.  Last night I reached my goal of running two miles without stopping!  I consolidated the first five weeks of the Couch to 5K because I wanted to complete the two-mile run before my follow-up pulmonary appointment. A good friend of mine came over and ran the two miles with me.  It was the hottest day of the year so far (a high of 90 degrees) but we ran around 8:00pm and it felt surprisingly pleasant. I was able to complete the two miles in about 27.5 minutes (roughly a 13 minute 45 second per mile pace) which I was very pleased with! My friend just ran a marathon a few weeks ago at a much faster pace, so I’m pretty sure it was more of a stretch for me than her, but she was kind enough to break a sweat at least 😉  It was so great to have her support!

Today I had my pulmonary appointment.  I’ve had a few moments of anxiety about this appointment the past few weeks.  Even though I’m feeling great with low levels of congestion and (relatively) high levels of energy and activity, I was worried about that cantankerous FEV1 score.  I was hoping to see a gain but my scores don’t always correlate with how I’m functioning. This morning I woke up feeling peaceful with a verse from the Psalms running on repeat through my head:

“She will have no fear of bad news, her heart is steadfast, trusting in the Lord.  Her heart is secure, she will have no fear; in the end she will look in triumph on her foes.” Psalm 112:6-8.

What blessed assurance!

Then my phone started blowing up.  At first I wasn’t sure what was happening.  I got one text with a photo, than another, than another.  You see, unbeknownst to me, Jaime had purchased some “breathe” bracelets from the Cystic Fibrosis Foundation and offered them to family and friends to wear as a show of support and solidarity. People started sending me pictures of themselves wearing the bands, saying they were thinking of me and praying for me this morning since it was my appointment day. I didn’t have any time to worry because I spent all morning overwhelmed and moved by the amazing show of love and support.

My wrist is in the center surrounded by pictures sent to me today from family and friends wearing the breathe band.

I carried that joy with me into my appointment and scored a 42 on my FEV1!  That is an eight point gain from five weeks ago and boy, I was thrilled. During my exam my lungs sounded clear, my oxygen saturation was normal, and my doctor was extremely pleased with the improvement in my symptoms and my increased exercise tolerance.  I’ll go back in 6-8 weeks for another check.  They will be monitoring me more closely as long as I’m taking the anti-fungal drug. I hope to see more healing take place in the next few months and hope to see my FEV1 get back to my baseline of 49 (or surpass it!).

I’ve mentioned before that a lot of good has come from the presence of cystic fibrosis in my life.  Today was a day overflowing with blessings that come only from this struggle. Fighting a tough battle like I did this winter with my health and experiencing victory is a spectacular feeling. Setting and reaching reasonable exercise goals in spite of a compromised body feels fantastic too. Physically, running is hard and not enjoyable. But persevering through the challenge is exhilarating. I thank God for the strength He gives me to press on.

Being on the receiving end of extravagant love and support from family and friends is also an amazing, moving experience. Jaime commented that I have a lot of people who love me and care for me and that are in my corner. And it’s true. I’ve been blessed with a wonderful family and many loving friends. In case you didn’t know, the phrase “in my corner” comes from boxing. The cornerman is a teammate or a coach who assists the fighter during the match. They stand back from the battle, in the corner of the ring, and help the boxer with the fight through coaching, advice, instruction and encouragement. They can’t throw punches or get right in the fray, but because of their proximity, they provide invaluable help and support to the fighter.

It’s the same with my cystic fibrosis. I’m the only one who can actually fight my battle. No one else can do the dirty work for me. But my loved ones stand in close proximity to me and help me through my battles by reaching out with love, with prayer, with help, and with the encouragement I need to keep up the good fight. I know for certain I could not do this alone.  So thank you friends and family for being in my corner, in the ring with me, experiencing the bitter moments of frustration and defeat as well as the sweet moments of triumph and victory.  Thank you being God’s dispensers of grace, and love, and strength. Thank you for crowding my corner.

 

Re-entry

Things are going pretty well over here in the land of the Venturas. I am continuing to take the anti-fungal drug and although there are some side effects, the most bothersome ones have lessened and it is manageable. I hope and pray it will make a difference for my lungs.

In the meantime I’ve re-entered my normal life!  I’ve been able to tolerate my usual level of activity for the past week or so and it feels wonderful. Thanks to some help from loving friends, my house is looking much more clean and organized, and today I spent a little over an hour digging up weeds outdoors. The weeds in our front beds seemed to sense the opportunity and multiplied at an alarming rate over the past few months. Lucas helped me by throwing the non-prickly ones in the compost bin. We pretended they were carrots instead of weeds and he had a blast!

Lucas and I have re-entered our social life as well and have enjoyed some playdates with friends and visits to the park. I am working hard at building up strength and fitness.  I joined a group of “cysters” (that means other women with CF) on Facebook who are using exercise to stay healthy and a handful of us are doing a 30-day ab challenge. Jaime expanded his One for One to include this and is suffering right along with me ;).

Operation Lace Up is in full swing and I’m on week two of the Couch to 5K program. Yesterday I was able to up my distance to two miles and did a combination of jogging a minute and a half and walking two minutes for the duration of the two miles. I’m moving at about a 14 minute mile pace which is a drop from the 12.5 minute pace I worked up to last summer, but I think it’s a good start.

This made me laugh! You’ve gotta keep a sense of humor about such things 🙂

It feels great to be progressing and I hope these increased levels of activity and exercise will help me regain my lung function.

This is what Lucas gets to do while I’m on the treadmill. He declined my offer to trade.

Jaime’s One for One (you can read his post here if you missed it) has been a great source of encouragement to me! He has found the time to run in the midst of a particularly busy spring schedule and I am so proud of him and grateful for his love and support. Maybe some day Lucas will run with me too.  For now, he’s been encouraging me by telling me multiple times a day that I’m not sick anymore.  And he’s got it right! The oppressive, acute symptoms are gone. I don’t know where my lung function is sitting right now, but maybe it’s best I don’t know.  Rather than focusing on that, I can get on with the business of living. There is no need to wait for a good report or a higher number. Today I can enjoy this life I love so much–colored at times with struggle and frustration and disappointment and defeat, yet bursting with joy and laughter and friendship and love.

“Happiness, not in another place but this place…not for another hour but this hour.” ~Walt Whitman

Pressing On

I headed back to the doctor at the end of last week for a recheck after a great appointment two weeks ago.  My lung function (FEV1) had come back up eight points while I was still feeling pretty sick, so I was excited and hopeful that I would see another gain now that I’m feeling so much better.  Instead of a gain, my score was back down six points, to 34.  Remember when I called the FEV1 a fickle fiend?  Well, that’s why. Oh the frustration.

There is really no good explanation for this drop or for why that number stays so low while my symptoms and stamina improve. Recovering from serious viruses does take time and with that in mind, my doctor hopes that over the next weeks and months we will see my lung function climb back up.  In the meantime, the only thing left untreated in all this is a mold called aspergillus which grew out of my lung culture. It has been there before, but has never appeared to cause problems for me, so I’ve never taken medication for it.  At this point, however, it is the last thing to try. Yesterday I started on what will be a three-month course of an anti-fungal drug to see if that will improve my lung function. The drug comes with a lengthy list of nasty side effects so we shall see if I’m able to tolerate it and finish out the course.

I’m sure you can imagine how discouraging this all is. I want to see that improvement so badly but so far my efforts and the treatments have not yielded that jump we need. But the good news is that I am still feeling much better than I was, 34 or not. I have resumed my normal life and am handling it well overall, although I’m requiring more sleep and rest. Last week I was even able to start exercising again. Welcome back, Operation Lace Up! I walked a mile and half at a 14-minute mile pace (pushing Lucas) twice, and the third time even tolerated a combination of jogging and walking at that pace (without Lucas). I’m hoping to restart the official “Couch to 5K” program yet this week.

Lucas and I (and his cat Ringo) after our walk last week.

I’m asking God to raise my FEV1, because He can surely do it even when my efforts and treatment options fall short. In the meantime I’m pressing on. I’m committed to living the life I’ve been called to with whatever health and strength I’ve been given and with joy in my heart. After all, 34 is just a number. It does not define me.

When the valley is deep
When the mountain is steep
When the body is weary
When we stumble and fall

When the choices are hard
When we’re battered and scarred
When we’ve spent our resources
When we’ve given our all

In Jesus’ name, we press on
In Jesus’ name, we press on
Dear Lord, with the prize clear before our eyes
We find the strength to press on

(song lyrics by Dan Burgess)

I press on toward the goal to win the prize for which God has called me heavenward in Christ Jesus. Philippians 3:14